So much to learn

Well yesterday Goose had a Dentist appt and Doctor appt and they both went bad. He now needs some dental work done (again) that means we go to operating room and be put to sleep. He has had dental issues since before he ever got teeth so this was no surprise. We have done well since we have put this off for 3 years just watching to see if he would lose the teeth and he has lost a couple. Then the doctor was our next adventure. I told the doctor Goose was regressing to being 2 years old again. Everything goes straight to the mouth. I was informed this was part of stemming (no I did not know this). Goose has actually chipped some of his teeth from chewing on items like video remote, remote to TV, etc. So the stemming is getting worse and I thought we were doing better. His heart rate is up and his blood pressure a little higher than normal. I am amazed at how much anxiety a 6 year old child can really have. The doctor informed me we may never know what he is thinking it could be anything. He worries about everything and anything always wanting to know what is next. He never stops always got to be doing something. Yes Goose suffers from ADD and I have known this for a long time but the older he gets the worse it is. Goose will be starting physical therapy on Monday and see if it helps with some pain he is having and the anxiety. I was informed that PT sometimes helps with anxiety in children so we are gonna try it and see if it works. I would try anything at this point just to give us both some relief.

Now my problem is I don't know what to do about Meds. The doctor is getting an appt with at Physciatrist but until then she suggested we might try an ADD medication. I would like to say I am totally against medicating children just to calm them down unless it is truly needed. I see my Goose as just that My Goose and he is the way God made him and I just deal with it but it is not about me it is about him and what will make his life easier. If any of you use medications and don't mind sharing your opinions and suggestions I would love to hear from you. Goose tells me all the time that he cant stop things in his head that it just wont stop. I cry every time he says this (you would have to see his face). I can see the frustration in his eyes and God knows I would fix it all if I could.

I need help here so Please if you can I am listening.

Regressing

I try to not compare the Goose to other kids in his class at school, daycare, church etc... but that is hard to do at times. I catch myself saying "Well Goose would never do that and he is the one with the issues!" then I just laugh at my self and try to go on. We were at the YMCA last night swimming and Goose always wants a life jacket on and that is fine but I want to teach him to swim without it (due to it looks really uncomfortable) so I was trying to get him to take it off. I said to him "Goose you don't see the other kids wearing a life jacket" and he said "Well Nana they are not me" I said " OK then you can wear it all you want" I then chose to leave it alone and let him do what makes him comfortable. It is funny how sometimes we as parents and grandparents have to be brought back to the real world by a 6 year old child. It doesn't matter what all the other kids are doing as long as Goose is happy in his world then that is where I need to be with him not trying to bring him into my world. I Love the Little Man and he is a true blessing to me.

Goose has decided he needs to put everything he touches in his mouth. I don't care what it is it goes directly to his mouth. I caught him the other day with a rubber band chewing on it. He chewed on his controller to his game until it fell apart (luckily I was there and he didn't swallow it). He has no fingernails left he has chewed all of them off. He tells me he cant get his head to stop it goes round and round all the time and it makes him nervous (not that he knows what nervous is that is what he says). I just tell him I don't know but if he can tell me what is bothering him I will try to help but he cant explain it to me. He has regressed to not playing at daycare with his little friend also. He had gotten to the point he would play with these 2 little boys (not talk just play) but yesterday the teacher said he just stood alone and would not play with anyone. When he got in the car he told me his head was going round and round and it made him nervous.

Autism has changed my life and I would give anything to change Autism but who am I to say the world Goose lives in is not better than the world I live in. God made him the way he is now I just pray that God gives me the strength and knowledge to Fight this Fight with the Goose and actually help him. Yes it is a Fight (some disagree) but for Goose it is a Fight to do the things that we consider normal (like getting dressed, eating, speaking, looking at someone, showing affection) and the list could go on and on. So I will continue with Goose on his Journey and I Will Fight his Fight!

What a Day

Sometimes it is like walking on eggshells around my house. Goose can go from really good to really bad in just a second. It is times like this that I feel so helpless and lost. I don't know how to help him or what to do for him.

I picked him up from Daycare and he told me a little boy kicked him in the back and was calling him names, then we get in the car (after I examine his back since teacher was gone) and all is fine. We get home and unload the car and I start supper. Goose decides he wants cereal so I gave him just a little to tide him over until the food was ready. I told him I was cooking and he could have just a little cereal. He then ask what I was cooking and I told him that I had him some macaroni and he said "Woooohooooo I love macaroni" so I'm thinking I have done a good thing. I tell him it is time to eat to come to the table and he said "No I'm not hungry!" Now there was only about 5 min in between the Wooooohoooooo and the No!!! I took his DS and told him he had to at least come to the table for a few minutes and that just fueled the fire!!! Now he decides he is gonna cry (real tears) and this is a kid that never cries! I wish I knew what happen in that 5 min that just turned him upside down. How do you go from one extreme to another that quick? I then could not touch him, talk to him or anything he just wanted to be left alone. When he decided to stop crying he informed me that he does not Love me!! I said " Yes you do you are just mad at Nana right now!" Now about 30 min has passed and he is still pissed and if I speak to him he burst out into tears. I just left him alone and went about cleaning the kitchen. Then he decided he was hungry and he ate and we talked about the food. Now it is time for homework and we fly right through it with no problem. He looks at me and says " I Love You Nana" I said " Well you didn't a few minutes ago so I'm glad you changed your mind" He said " I always love you Nana"

The evening was like dealing with two different kids!! He is now happily asleep and that is where I'm going next. Just wish I could get into his head. The way we know he is really sick or had a really bad day is if he actually cries real tears so something had him upset but he is not gonna talk so I am not gonna know what it is. It is like pulling teeth to get him to talk so I just let it go and told him if something was wrong he knew he could tell Nana anything and I would try to help him. I Love You Goose!!!!

I am having one of those weeks where I am just mad at the world and everyone in it. It seems like every time I turn around it is someone wanting something or something needs to be done and then Goose gets sick. I am exhausted. I am unemployed and cant get any help since Goose is not my child (even though he lives with me). Then you have Child Support now that is just a joke all on it's on. His parents will do nothing except live there lives they don't even come see him, call him or shit!!!! Then you add the other grandmother who has decided that she does not want to be a Nana so she has left him also. He realizes all of this and I know because he ask about them and I have to come up with a good answer to keep from hurting him even more. I try to pray for them all but it is really hard sometimes. I just want to tell them all what I think of them and get it off my chest. He loves my fiancee to death but he is in and out since he lives in another state (which helps in no way with routine). I go to bed at night and I pray but I'm thinking now that God is mad at me for some reason since nothing ever seems to get better or change. Prayer has gotten me through so much in my life and now it is like my prayers are just being ignored. It seems that the people who are mean, uncaring, thoughtless and hurtful people are the ones that seem to have it all. Just don't understand. Then I look at Goose and ask myself "What do I have to offer him?" My only answer is love cause that is all I have. I love him with all my heart and soul. We as parents and grandparents would do anything for our kids but you also like to do the things that are just fun not necessary. I can barely do the necessary much less the fun while all the other so called family members are living there lives and enjoying there lives. I know if anyone reads this you are gonna think geeezzzz what a mean lady but I'm not mean I'm just tired. I never really get a break and I need one. When he is at school I always have something to go do because you cant do these things with him unless you want a fight. On a day I have nothing to do I'm so depressed all I want to do is sleep so I don't think. 

I do want to thank my youngest daughter and my fiancee and son in law for all they do. They are about the only ones I can depend on. My daughter and son in law will help if I ask them to and my fiancee does so much for Goose and I both he is amazing and I love him dearly. 

I wanted to go back to school but register for the class and then didn't have the money to take it so that ended that. I have got to find something to do or I'm gonna go crazy. I mean something to do for me not for everyone else. I guess I just need some me time. 

Coming Home

The day we came home it was such a beautiful day and exciting day! We had no idea what was getting ready to turn our lives upside down. The hospital had told us the crying would calm down once he got home and got settled in to his surroundings!!! Ha Ha they were soooooo very wrong! Goose cried a lot, he did not sleep through the night, would not eat, nothing he was so miserable. I could calm him down with a bath and that was the only thing that worked (for a while) then that was over. I was working 60 hrs a week and not getting any sleep due to the fact he wanted me to hold him, not his mom or aunt just me. I thought he is just spoiled and I have got to stop holding him. Nope, that was not it at all. As Goose grew I knew something was going on with him. He would not eat or play he really made no noise at all and if anyone came to visit it was a nightmare. You could not make any loud noise and you had to almost fight him to get clothes on to go anywhere. I could not get anyone to understand (doctors, parents etc) that something was wrong. They would say "Oh he is just spoiled and he will get passed this stage!" He would want to play with the same toys all the time and watch the same cartoon over and over then he would act like what he just saw. There again the doctor laughed and said "Guess he just likes that cartoon it will pass". By the age of  (well I'm gonna guess here) about 2 he was not crawling or doing anything he should of been doing so I looked at the doctor and said "So is this just a phase and it is gonna pass?" I know I was being a smart ass but Oh well I was tired of being nice. I guess you know we then changed doctors! We went to a doctor I knew nothing about and hoped for the best. I don't usually go to a doctor that I know nothing about but went out on a limb I was desperate at this point. We walked in the office which made Goose very anxious since he had never been there and I didn't say a lot I wanted to see if the doctor would notice the fingers flicking and the anxiety level and SHE DID. We fought through a lot of battles to finally get a doctor who would listen and it still took over a year to see a doctor who would give us the diagnosis of "Autism". By the time we saw this doctor we were trying to potty train (now that was fun, not). The doctor was amazing he stayed with us for 4 hours and tons of questions,physical exam and watching before he gave us the Autism diagnosis. I just sat and cried and he let me! I knew nothing about "Autism" and had no idea what to do except Pray! He have me a lot of paper work and information that day but way to much for me to remember. I was overwhelmed and frustrated. Then I told myself "Stop acting crazy this is the same child you have been raising for 3 years now you want to panic!?" I will say the same doctor not only gave us the Autism diagnosis he gave us the OCD, anxiety disorder on that same day. It was a lot and I was just trying to take it all in and get all I could manage to retain so I could make sure Goose had all he needed to make it in a cruel and uncaring world.

They have taken Goose to the NICU and working on my daughter. The nurse said it would be a couple hours before we could come see Goose (which seemed like forever) so I went down to waiting room to tell everyone the heartbreaking news. In the waiting room were my parents,brothers, daughter,etc. and the other Nana and her mother. As I walked in the room you could feel the tension in the air they were all just waiting for me to come back. I slowly walked up to my Mom and she stood up and grabbed me and just held me a I cried like a baby. I slowly got myself together and informed the family and friends that Goose was in NICU and he had contracted the Strep B. Now the waiting began. I went back to check on my daughter and she was being sent to the heart floor and need a blood transfusion. Now I had Goose in the NICU and my daughter on the cardiology floor (this is exhausting just thinking about it all). I walked down the hall with tears flowing to just look in the window and see if I could get a glimpse of Goose. I did get to see him and his Dad and his entire family was with Goose and had told the nurse not to let me in. WOW now that was a slap in the face!!!!! This man had not been to but 1 doctor appt and you want to tell me I cant see my grandson???? Not NO but HELL NO!!!! I was mad now and it was not gonna be good. They had ask my daughter who would have the 2nd wrist band and she said "Mama" but another nurse gave it to Dad. I could not get in to see Goose I was devastated , what was I going to do???? I went to the Dad and ask him "Why did you take the wrist band?" He said "So you didn't get it (laughing)!" I turned and walked down the hall and the more I thought the angrier I was getting so I went back to him and said "Just so you know I will see my grandson and you or no one else will stop me!" My daughter was very upset but the doctor knocked her out to calm her down so I just sat with her and held her hand. We were stuck and there was nothing I could do but pray!! Dad and his family had left the hospital and we were stuck, my daughter was knocked out and was not allowed out of bed when she did wake up so we continued to sit, pray and wait. 

I would walk down to the NICU and stand outside in the hall and look in the window. The only thing I could see was his bed and part of his foot but I could at least look. I did this off and on all day long then go tell my daughter he was fine I say his foot move. She had ask the nurse if I could go see Goose but they said "You have to have a band". Finally, the Nurse at the NICU felt sorry for me. She kept seeing me stand out looking in the window and crying till she finally came out and ask me "Which baby is yours?" I told her which one and she wanted to know why no one had come to hold him or sit with him.I explained the situation and she said "Give me about an hour and let me see what I can do." I was so excited I cried all the way back to the room and told my daughter that I might get to see Goose and she told me "OK Mom quit crying so you can take pictures for me". Here we are waiting again but at least we had hope someone was gonna let me in.

The phone rings!!! I answer it with "Hello" and the voice on the other end says "Come see your grandson." Thank God I'm gonna see my Goose!!! wooooohooooo (Happy Nana) I am now walking back down the hall crying again (this time tears of joy). I get to the NICU and wash my hands put on the gown thing and go in the door. Geeeezzzzz didn't think my heart could beat so fast!! I walk over to a beautiful little boy with needles in him everywhere!! The Nurse grabbed a chair so I could sit down before I hit the floor. I was not prepared for what I saw but now we were together and everything was gonna be fine. I was not allowed to hold him but I could touch him to let him know I was there and I was happy for that. Something was better that nothing. So I talked to him about how much he was loved and how he was gonna have to fight . I told him about his toys and his room and anything I could think of. I was taking pictures non stop and then I had to go my daughter was not doing well. I got to her room and she would not even look at the pics I had taken. The Nurse came in and told us about an hour later that Goose needed a feeding tube and the doctor wanted my daughter to come to NICU and see if he would eat for her. I ask "Why will he not eat?" Nurse "He forgot how to suck." My daughter didn't want to go but we physically got her out of bed, put her in wheelchair and had to make her go.

We got to the NICU and they handed Goose to his Mom and he would not suck!! She handed him to me and I took him in my arms and kissed him and talked to him then it was time to put the bottle to his mouth. We only had an hour to get him to eat or he would have a feeding tube. I looked at him with bottle in hand and said "OK Goose take a drink for Nana cause I'm tired of crying and I love you buddy." He took 2 sucks!!!! Thank God we had another chance (not a big one but a chance). He did not have to have feeding tube!! 

The next day my daughter was sent home her heart rate was down and all was going good till they told us Goose could not come with us. He had to stay until he would eat. That was a hard 1 hour drive home. I called my parents and told them to take down all the decorations cause he was not coming home. Over the next week Goose stopped eating again and was jaundice and had to be put back on antibiotics for another infection. My daughter and I made the 1 hour trip daily to set with Goose and just be there with him. Goose had many ups and downs but 2 weeks later Goose was finally COMING HOME!!! 

The day our Journey finally began was one of the best and most stressful days of my life. His mom has a heart condition and Strep B so we had a room full of people. His mom had an ablation when she was 8 months pregnant and was the only woman to ever have this done so far along in pregnancy. She also had Braxton Hicks for 7 of the 9 months so before Goose ever got here he was going down in the record books. We did not know what would happen during birth due to the heart condition and a C-Section was not an option. So, now the fun begins!!!!!!!!!! 

His mom passed out multiple times and was hooked up to every monitor known to man (well not every one but to us it was) and a doctor we had never met is standing out in the hall argueing with the other doctor as to who is going to birth Goose. We found out that this birth was going in the record books and the doctor who had been with her through it all was suppose to be leaving and this other doctor was suppose to take over. Yes, this was a High Risk Pregnancy Group standing in the hall arguing with each other. The doctor came in and found out she had Strep B and hit the roof. He was very mad and said "We have got to get this baby out NOW"! The pushing has started and he is very big baby for her but she did it! WooooooHooooo now the fun begins!!! 

Goose is here and something is wrong (no they didn't say anything I just knew) I snapped a couple of pics and off to the waiting room to show the family. I showed my Mom and busted into tears. I told her "Something is wrong with him" she said "Why? What did they say?" I said "nothing I just know" and I left the room. I was walking down the hall and I heard someone say "Here comes her Mom". I looked up at that time and you couldn't even see the door there were so many people in the room. I walked in and my daughter handed Goose to me to hold and the NICU was waiting to take him. I went to hand him to the nurse with tears flowing and she said" Well Nana you didn't give him a kiss" I said "Can I?" she said " of course you can" so I gave him a kiss and told him to be strong for Nana and I loved him more than he could ever know. He opened his eyes and looked at me and then shut them back. I then handed my gorgeous grandson to a woman I didn't even know and I cried like a baby. Goose had strep B and that is life threatening to babies. He was going to NICU and Nana couldn't go!!! https://www.facebook.com/pages/Autism-fun-tags-offered-at-kaleidoscope-reflections/221411471272482?sk=photos_stream